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Pain Management in Pgh - SO Frustrated!

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  • #31
    Originally posted by Nickib View Post
    UPDATE - Danny started on 2 Neurontin three times a day last Friday and oh my gosh what a difference! The weekend was great! A couple of times he was anticipating an intense spasm and as quickly as he thought it was coming on, it just stopped. I was so happy for him! He also STOPPED the magnesium all together and viola! - no more accidents! Unfortunately, he has had more pain in the last two days than he did all weekend and mentioned going up to 3 of the 300 mg Neurontin three times a day on his own. This scares me a little though because it's awfully fast and not - IMHO - titrating slowly enough. But then, I'm not the one in excruciating pain. As always, I welcome any thoughts on this next step without consulting a physician. Has anyone done this on their own? Safely? I am hopeful that once we are together each day that we will carve out time for him to use his stander on a regular basis and I am going to begin some leg exercises and some muscle massage as I truly believe those few simple things, done regularly, cannot help but make a positive difference.

    Good news so far. But yes, your gut is correct. Don't jump up on Neurontin too fast, and make sure your doctor knows what you are doing. You will have more side effects and may not tolerate it as well if you go too fast. We don't know what other meds you are on and as you get to higher doses the Neurontin can be more sedating. So slow it down a little.

    First, call the doc and tell them what you are doing. Make sure they are ok with it. And I'm assuming you have an appointment soon? Remember, you are going to run out of medicine soon if you are ramping up the dose on your own, so make sure your doc knows what's up. Remember, he thinks you're on Lyrica!

    Next, if the doc is ok with your strategy, then try increasing Neurontin in general only 300mg at a time. Give it at LEAST 3-7 days, and then add another. So maybe you increase your dose to 600 (morning)/600 (mid-day)/900 (night).... and see how it goes. See how I increased the dose at night first? So in case it makes you a little more sleepy, it doesn't crash your day. Ask your doc how he likes to do it.

    Remember, the baclofen is for the spasms. If you haven't started that yet, confirm with your doctor whether it is better to add that in first before increasing the Neurontin more. The Neurontin is more effective for the nerve pain - not spasms. They both are contributing to his discomfort. Baclofen will definitely make you more fatigued, so do not adjust that dose without talking with the doctor.

    Also, does he have a medicine for bad, breakthrough pain? Like an oxycodone or vicodin or something? It is better to use some of those while you are optimizing your other meds.

    I recommend you purchase a small pocket calendar. Write down the day you start each medicine, the dose, when you increase it. This is very useful to the doctor. Start writing down a number on each day (1-10) to describe your pain that day. I know this is incredibly crude. But you need to start somewhere.

    Absolutely, stretching is essential. My father gets amazing pain relief from stretching. Everyone's different.

    Good luck. Call your Doc!
    Last edited by hlh; 05-23-2012, 07:50 PM.


    • #32
      hlh - I can't thank you enough for that wonderfully informative reply! I am passing this information along to Danny and certainly will see to it that a medical professional (probably his PCP since the pain management doc was supposed to send a letter to him as to the status) is updated on everything. No, we haven't started the baclofen. It was supposed to be lyrica 75 mg then if that didn't help 150 mg and if that didn't help THEN switch to baclofen. He started the neurontin again because he has it and it does seem to be helping. Yes, he has vicodin for breakthrough pain and so far this week he hasn't needed it. Thank you again for the reminder that the baclofen is for the spasms. I am hopeful that one medication (maybe the neurontin) will manage the pain well enough (with the standing and stretching, etc.), that he may not need the baclofen, but only time will tell. The pocket calendar is a great idea - again, once I am with him daily, I will be better able to keep track of this stuff! Thank you again! I will post more as time goes on. LOVE THIS FORUM AND COMMUNITY!!!! God Bless!


      • #33
        it really sounds like the docs dont have a clue to what id going on with him. The question about did each different doctor actually touch anf feel that rock hard area of ? . that is important, cause if they haven't, run. I just remebered what skelaxin is it is a muscle relaxer i believe, unlike baclofen of zanaflex which are for spasms, and maybe contractions.i was on all of them. if the knotted area is a muscle, Valium will work and fast, and at least when you feel it it will be much more relaxed. Beware Valium has an incredible long half life, a reason they may not want to try it with all the other meds, i just think if it is a knotted muscle the muscle relaxer class's like flexaril or another one that begins with a metha ? or , valium, would work. Maybe Vitamin T, Toridol, the NFL's pregame prophalatic med. if a lot of the pain is gone when the knot is gome at least your on to something. If the knot continues to come back i would guess he needs a doctor that can find what is causing it, cause it isnt normal.i don't know why they would stop lyrica and go to baclofen, he may have two distinct pain syndromes one mechanical that is casuing the muscleknot. A second one from the injury, i have to read over it again to see if there was a second distinct pain. i am back on neurontin when i was on it the first time i was at 3600 a day, i had to get a calculator to check,i remeber 900 x 4 a day , i think i jumped from 2400 to 3200 to 3600 if i have any memory, it worked and worked well ,but i also had ultram, usuallu 4 x 50 a day, oxycodone, amyitrityline, the 3 phase approach is usually the best if its nerve pan since they are supposed to work bettter togethet than either at a higher dose alone. i was on zonfram, topamax, alot of anti seizure meds i think except for the one that probably would have worked well carbagaline tegermet or something, it was one of the original ones, i'sd stick with higher doses of neurontin . Lyrica never did anything for me, i am back on neurontin along with strong opiods including the one the hip crip mentioned. Met has a long half life where oxycontin would wear off in 5 hours, which reulted in more oxycodone for BT pain.
        Thats the real scene though a long lasting med , like a narcotic if neurontin doesnt cut it, keep the neurontin add a BT med and even 10 mg or amitriptyline at night can do wonders, it did for me.
        i never took a fenatyl patch so have no idea on if that is a normal jump, withut trying oxycontin first,but it is long acting, be very careful with them, and follow the directions about shpwering and taking it of, etc lot of dead people due to at least the generic ones.
        It sucks that he is in constant pain and i think that is wrong, if he has vicodin and doesnt take it , well he isnt following the dr rx. I did the same thing, i would tale oxycodne in the beginning, and would call up my doctor in incrediable pain, and he would ask how much oxy i took and i would say none, meanwhile i had a bottle of 120, there was a reason i had the bottle of 120. because i was suppose to take it, It takes a while to realize your F#cked. But being here for a long time, you learn how bad it really can be.
        cauda equina


        • #34
          If she is a Pa resident Cleveland Clinic Pain Medicine department will not treat a patient that came from farther than 30 minute drive or from across state line. Until i found my Doctor in Pittsburgh i had been being seen in cleveland for other things so i tried there for Pain Management and they let me drive all the way there just to tell me nope you crossed the state line to get here we will not see you. But thats Okay i have now been with an excellent Pain specialist in Pittsburgh for 5 Years and i would not leave her for all the money in the world she is awesome.